Improving end of life care in chronic obstructive pulmonary disease (COPD): testing the case for change

1. NHS
CANCER
NHS Improvement
Lung
DIAGNOSTICS
HEART
LUNG
STROKE
NHS Improvement - Lung: National
Improvement Projects
Improving end of life care in
chronic obstructive pulmonary
disease (COPD): testing the
case for change

3. Contents 3
NHS Improvement - Lung National Improvement Projects -
Improving end of life care in chronic obstructive pulmonary
disease (COPD): testing the case for change
Contents
Introduction 4
Key Learning 6
Section 1-3: Case studies
9
One - Breathing Space, Rotherham
13
Two - Solihull Community NHS Care Trust
15
Three - Hartlepool Primary Care NHS Trust
17
Acknowledgments
18
References

4. 4 Introduction
Introduction
National position and workstream The projects in the NHS Improvement -
context Lung End of Life Care workstream are a Advance Care Planning – Giving
major step towards achieving these aims. people the opportunity to discuss
Around half a million people die They represent a wide variety of clinical their wishes around issues such as
every year in England. The end of life is staff who are focused on addressing the resuscitation and representation on
inevitably something everyone must face, key issues of: prognostic indication, loss of capacity is important and
but it is perhaps the most difficult and Advance Care Planning and palliative should be undertaken when the
sensitive issue within society today. Even care registers. patient is as well as possible.
for healthcare professionals it is widely
acknowledged that it can represent one The following sections in this document There is a plethora of published
of the most challenging clinical areas in describe each of the NHS Improvement - patient information available to
which to specialise. Lung sites, aims, objectives and details clinical staff to aid them in their
the learning and progress that has discussions with patients but staff
In 2008, the Department of Health emerged. confidence around advanced
published the End of Life Care Strategy communication skills was very low.
in response to the significant variation in Summary of site projects There is a considerable variation
service provision across the country. It between the training which cancer
highlighted the need for the NHS and There were three End of Life clinicians receive and which is
social care services to provide holistic, improvement projects running in the available for staff managing patients
high-quality care for all adults at the end following organisations: with a long-term condition.
of life, and their families and carers, and
advocated the value of supported care • Solihull Community NHS Care Trust Raising awareness – The issue of
pathways to help make this a reality. Care (West Midlands) death and dying is a sensitive topic
pathways have been successfully • Hartlepool Primary Care NHS Trust but lack of awareness amongst
developed for a number of potentially (North East) patients and more surprisingly
terminal illnesses, such as dementia, heart • Breathing Space, Rotherham Primary amongst staff about the potentially
disease and stroke, and should now be Care NHS Trust (Yorkshire and the life threatening nature of the
evolved for chronic obstructive pulmonary Humber). condition impacts on the care COPD
disease (COPD) which accounts for patients receive in the final stages of
around 23,000 deaths a year. life.
Summary of key learning
Currently, less than 50% of clinical The tendency to continue with
services for COPD in the NHS have a The key learning (see next section proactive management of symptoms
formal arrangement for users of these for more details) is centred on the and maintain a positive prognosis
services to gain access to specialist end of following themes: means seriously ill patients are at risk
life care. In order to meet this challenge, of not being able to plan ahead at
clinical staff must ensure that COPD is Prognostic indicators – Sites were the right time with full
recognised as a cause of death amongst testing two different indicators; the understanding of their condition.
patients. It is also vital to give people the Gold Standards Framework
opportunity, and to help them to plan for Indicators and the BOD (Body Mass End of life registers – Currently,
their future care. In conjunction with this, Index, Obstruction, Dyspnoea score) palliative care Quality Outcomes
commissioners and providers should which is an abbreviated form of the Framework (QOF) registers are
ensure access to end of life care services, BODE index (Body Mass Index, utilised in GP practices to identify
in line with care provided to those with Obstruction, Dyspnoea and Exercise those people approaching the end of
other life threatening illnesses such as – Celli et al, 2004). Evidence life, thereby helping ensure that their
cancer. suggests there was variability in the needs are met. However, they are
reliability and validity of using generally incomplete and biased
indicators to accurately predict the towards the care of those with
last six to 12 months of life. cancer.

5. Introduction 5
together across boundaries to spot the Finally, it is hoped that this work will
The Department of Health End of opportunities and manage the change. provide an enhanced recognition of
Life Care Strategy (2008) advocated And third, to act now, for the long term. COPD across the medical community as a
the development of ‘End of Life Care serious and invariably life-threatening
Locality Registers’ as a means to The ambition is to achieve efficiency disease to ensure healthcare professionals
support the provision of high quality savings of up to £20 billion for start having discussions with people
coordinated care and to address the reinvestment over the next four years. about their wishes at end of life. This will
shortcomings in the current practice This represents a very significant ensure patients receive care appropriate
registers. The locality registers are challenge to be delivered through the to their specific needs.
electronic records containing detailed work the NHS has already
important details about care undertaken on Quality, Innovation
provision and the preferences of Productivity and Prevention (QIPP) and the
patients identified as being at the additional opportunities presented in the
end of life. This information can be Equity and Excellence: Liberating the
then easily accessed by all healthcare NHS.
professionals that the patient comes
into contact with. Key to the Many of the measures outlined in this
effective implementation of a locality document are designed to support the
register is ensuring effective NHS to meet the QIPP challenge, either
mechanisms are in place to identify by identifying where resources might be
all patients approaching the end of released or by improving understanding Hannah Wall
life, whether this be a GP, a member of the key interventions that have National Improvement Lead,
of the community team, or other greatest effect. NHS Improvement – Lung
health and social care professional,
and ensuring that effective Considerations for future working
education and training is in place for
all the relevant professionals around All the projects within this work stream
identification, communication and have been building the evidence for the
advance care planning. An creation of a gold standard pathway for
evaluation of the pilots undertaken COPD end of life patients but it is
by Ipsos MORI is available at: apparent that more work is still needed.
www.endoflifecareforadults.nhs.uk/
publications/localities-registers-report There is limited evidence over the validity
and reliability of different types of Phil Duncan
prognostic indicator and this should form Director,
the basis for future work to address NHS Improvement -Lung
Quality, Innovation, Productivity dominance of certain indicators over
and Prevention (QIPP) others and at what point in the patient
trajectory they should be used.
Demand for healthcare is increasing and The use of Advance Care Planning at the
there are areas where we could increase appropriate time has yielded positive
the quality, efficiency and value for feedback from patients and carers
money of services as well as improving therefore it is hoped that adoption and
outcomes for people with COPD. Three spread throughout other parts of the
things need to be determined to make country may occur.
this possible. First, improving quality
whilst improving productivity, using
innovation and prevention to drive and
connect them. Second, having local
clinicians and managers working

6. 6 Key learning
Key learning
The end of life care pathway which Prognostic indicators There can be many such exacerbations
features in the Department of Health End Central to commissioning a high quality, during the more severe stages of the
of Life Strategy (2008) contains all the cost effective service is a better disease and this make prognosis
components of a gold standard approach understanding of the end of life phase of extremely difficult.
to care and is the model against which COPD and one of the most challenging
NHS organisations should aim to plan areas within this is the patient trajectory.
their services. Trajectory of malignant disease
In malignant diseases, such as cancer, it is
End of life care in chronic obstructive easier to predict the rate of deterioration 100
pulmonary disease (COPD) is a complex and the amount of time which the
process but good care is essential as patient may have left to live because of 80
Function %
nearly 23,000 deaths occur each year the nature of the condition and gradual
from the disease which is approximately worsening of symptoms. 60
5% of all deaths.
In COPD, the steady downward decline is 40
Death
The three projects within the end of life replaced with a relatively unpredictable
20
care workstream have focused on testing series of stable periods dispersed with
key elements of this pathway and to troughs. The troughs represent an acute 0
examine what a pathway adapted exacerbation (attack of breathlessness) Time >
specifically for patients with COPD might from which the patient may recover back
begin to look like. to a relatively good degree of health.
Trajectory of COPD
100
End of Life Care Pathway (End of Life Care Strategy)
80
Function %
Discussions Assessment Delivery of 60
as the end care Coordination high quality Care in the Care after
of life planning of care services in last days death 40
approaches and review different of life
settings Death
20
0
What could this like for COPD specific patients? Time >
Prognostic Advance Care End of Life Acute/ Liverpool Support for
Understandably, clinicians do not wish to
Indication Planning Care GP Community Care Carers
(Preferred Practice Palliative Pathway initiate end of life care until it becomes
Priorities of Registers Care Teams Achievement entirely appropriate but equally want to
Care, of Preferred
resuscitation, Priorities of
give patients realistic information on the
Advance Care severity of their condition and time to
Decisions) plan ahead.
INFORMATION

7. Key learning 7
There are several sets of prognostic Two workstream projects looked Advanced Care Planning
indicators which are in use at present. specifically at the use of prognostic A key component of any end of life care
The most prolific is the Gold Standards indicators. Breathing Space in Rotherham service, regardless of disease, is that of
Framework indicators for COPD and assessed the Gold Standards Framework Advanced Care Planning. This is where
current guidelines recommend that indicators with patients on admission and the patient is given the opportunity to
patients who exhibit one or more of the those outpatients attending pulmonary document future wishes on a number of
following symptoms may be entering the rehabilitation to determine how many areas such as:
end of life stage. indicators may be present and how this
may relate to time until death. Learning • Their Preferred Priorities of Care e.g.
Another indicator widely used is the in the project suggested that overall at their chosen place of death
BODE index (Celli et al, 2004) which takes least three were needed to accurately • Their views on resuscitation and
a score from a collection of predict when the initial discussion was treatment through the use of an
measurements (Body Mass Index, FEV1 warranted. The findings support this as it advance decision and do not attempt
obstruction, MRC dyspnoea score and was witnessed from the 83 patient resuscitation documentation
exercise). Alternatively many clinicians use deaths which occurred during the project • Who they would like to appoint in the
evidence based judgments to determine 18 had three or more indicators present event they loose capacity e.g. a Lasting
when the threshold is reached. However, at the time of death. Power of Attorney.
the validity of all these indicators and the
evidence of their effectiveness are still in In contrast Hartlepool Primary Care NHS The use of supplementary written
the process of being gathered. Trust used an adaptation of BODE which information to aid clinicians when having
was the ‘BOD’ score. From data analysed these discussions with patients is useful
the project lead discovered that BOD may but selecting which information to use,
be a predictor for the very early stages of when to use it and how much to use is a
• Disease assessed to be severe decline amongst patients – perhaps those complex and sensitive area which requires
e.g. (FEV1 <30% predicted – with more than the traditional six to 12 careful judgement on the part of the
with caveats about quality of month timescale which normally defines clinician involved.
testing) the end of life. This may be extremely
• Recurrent hospital admission important learning as it may signal a The project sites found there was no
(>3 admissions in 12 months phase where changing interventions are shortage of available information they
for COPD exacerbations) considered and regular reviews may need were able to use or adapt. Some of the
• Fulfils Long Term Oxygen to become more frequent in order to popular choices included information
Therapy Criteria maintain stability in disease control and produced by: the National End of Life
• MRC grade 4/5 – shortness of slow the rate of disease progression. Care Programme, the National Council
breath after 100 meters on the for Palliative Care, The Whittington NHS
level or confined to house Two of the sites (Solihull Community NHS Foundation Trust, St Christopher’s
through breathlessness Care Trust and Breathing Space) also Hospice and the British Lung Foundation.
• Signs and symptoms of right tested use of the ‘surprise’ question, Breathing Space in Rotherham were
heart failure which basically asks the clinician to trialling the British Lung Foundation
• Combination of other factors consider whether they would be surprised literature but have decided that ultimately
e.g. anorexia, previous if the patient was still alive in 12 months they would like to produce their own
ITU/NIV/resistant organism, time. Both sites felt this very simple tool literature which has information patients
depression to be highly effective as a predictor of can add to depending on their needs and
• >6 weeks of systemic steroids death and both advocated its accuracy as how much information they feel they
for COPD in the preceding 12 on a par with or above the more formal would like.
months. prognostic indicators they tested.
Gold Standards Framework Prognostic
Indicator Guidance

8. 8 Key learning
Some sites have found that there are The first step the project sites took was in Primary care end of life registers for
patients who do not wish to talk about determining the understanding and patients with end stage COPD
death, dying or end of life care in relation knowledge of staff in order to audit both It is widely acknowledged that patients
to their COPD. They accept these patients the awareness and the skills of individuals with COPD should be regularly reviewed
will always exist and that the wishes of on end of life care they had in the clinical in primary care. Patients who are deemed
the individual must be respected. teams. There is some excellent to be at the end of life should be added
information on undertaking skills audits to the practice end of life register (which
Breathing Space also found that a small and determining what level of could also be named ‘the palliative care’
number of their patients were distressed competency and training staff need. The or ‘the Gold Standards Framework’
when the subject of Advance Care sites carried out a training needs analysis, register). This enables them to be placed
Planning was broached. Staff at the reviewed existing provision and on the correct pathway to access
facility considered that for some patients benchmarked it against national treatment and support.
timing of the discussions is very important competences. They then used a needs
and as such an inpatient facility after an based approach to develop new training Two of the projects looked at increasing
acute episode may not be right for them. plans. For more information visit the numbers of COPD patients on the
Some staff and experts in end of life care www.endoflifecareforadults.nhs.uk/public end of life registers (which nationally
believe that the right time is when the ations/talking-about-eolc averages at about 14%). Solihull
patient is feeling relaxed and well, Community NHS Care Trust spent a
perhaps at an earlier stage in the Once the improvement projects had the considerable amount of time and effort
diagnosis. This can often be less baseline they were then able to initiate undertaking some ‘leg work’ amongst
distressing and potentially more positive any training e.g. advanced their GP surgeries to generally raise
with regard to planning. communication skills, and clinical awareness of COPD as a life threatening
supervision which was needed. Within condition and also undertook training for
Raising staff awareness the projects some staff had already primary care staff in using prognostic
Raising the awareness of COPD as a received training through Association of indicators and undertaking Advance Care
terminal illness amongst clinical staff is Respiratory Nurse Specialists (ARNS), Planning when COPD patients were
one of the key imperatives in improving some staff had in-house training moved onto the end of life registers.
end of life care for sufferers of this arranged for them which was delivered
condition. through small groups by a visiting Hartlepool Primary Care NHS Trust
palliative care specialist, and others were worked with two practices to review their
Respiratory staff understand that COPD is the need has been identified are now current COPD registered patients using
a very serious illness and will be familiar waiting to attend future courses. the BOD prognostic indicator tool. Some
with patients who have suffered severe of learning identified the need to engage
exacerbations and have been very ill. The National End of Life Care Programme primary care in this process to determine
However, the overriding evidence from all launched a new e-learning package in if the correct codes on the patient records
project sites was felt that some staff were January 2010: e-End of Life Care for All. system are being used to record a
hesitant to acknowledge when proactive It is freely available to all healthcare staff, diagnosis of COPD – as this will
treatment in a COPD patient may not be with some public-facing modules for significantly affect how the patient is
appropriate anymore and were thus volunteers/carers, and currently contains managed and ensures that the patient is
reluctant to engage in the projects. They several sections on communication on the correct clinical pathway in
were also unsure of their competence to skills (for more information visit accordance with their condition.
treat COPD patients when end of life www.e-lfh.org.uk/projects/e-elca)
became a possibility. The desire to return
patients to full health and the messages
which patients received from clinical staff
around prognosis and recovery was often
based on this premise.

9. Breathing Space, Rotherham 9
One - Breathing Space, Rotherham
Prognostic indicators and advance care planning in chronic
obstructive pulmonary disease (COPD)
The background to the service
Breathing Space is a unique nurse led
facility in the heart of Yorkshire which
was built in 2007 as a result of a
partnership between the Coalfields
Regeneration Trust, Rotherham Primary
Care Trust and Rotherham Metropolitan
Borough Council.
It is the largest multidisciplinary
community based chronic obstructive
pulmonary disease (COPD) rehabilitation
programme in Europe. Originally the sole
aim was to care for patients with COPD
and this has now been extended to other
chronic respiratory conditions. Its facilities
include clinics for assessment and
accurate diagnosis, pulmonary
rehabilitation (for more than 400 patients
a year) and a 20 bed inpatient unit
dedicated to providing care for acute
exacerbations.
At the time of joining NHS Improvement - The project aims and objectives • Do patients who have had Advance
Lung, the Nurse Consultant and Project The main aim of the project was to Care Planning achieve their preferred
Lead, Gail South, had identified that advance the service delivery model for place of care and other goals?
many of the COPD patients at Breathing end of life care at Breathing Space as a • Do senior staff feel competent and
Space had at least one of the Gold choice for COPD patients and to support confident at having these dscussions
Standards Framework prognostic the carers of these patients during this after appropriate training?
indicators often used to determine the difficult time.
last 12 to six months of life. This provided What they did
the catalyst for the service to look at the The project hoped to answer some of the A baseline audit was undertaken to
provision of end of life care and how this following questions: determine whether there was any
part of the pathway for patients at the evidence to suggest prognostic indicators
facility could be improved. • Are Gold Standards Framework would be found amongst previous
prognostic indicators for COPD patients who were admitted to Breathing
predicting death within 12 months? Space. This revealed 60% already had at
• Are COPD patients with at least one least one prognostic indicator.
Gold Standards Framework prognostic
indicator (and their carers) interested in
participating in Advance Care
Planning?
• Do staff feel that patients with at least
one Gold Standards Framework
prognostic indicator are appropriate for
Advance Care Planning?
Gail South (left) – Project Lead

10. 10 Breathing Space, Rotherham
A paper audit form was then designed by Issues and challenges Key learning
senior staff to be used to capture any Department of Health policy aimed at The majority of patients who died during
prognostic indicators present in patients transforming community services meant the period of the project had more than
attending assessment as an outpatient to that Breathing Space integrated with three Gold Standards Framework
the pulmonary rehabilitation programme Rotherham Foundation NHS Trust in indicators present on their last admission,
and at time of admission during an acute March 2011. This represented a challenge although overall staff felt the surprise
exacerbation. The final page of the audit in terms of the continuity for the project question was perhaps a better predictor
form asked the staff member responsible as the then current provision of services of death within a six to 12 month period.
for admission to decide whether to was reviewed by the new host The ‘surprise’ question asks the clinician
initiate an Advance Care Planning organisation. In order to mitigate this the to consider whether they would be
discussion with the patient. This included senior team at Breathing Space involved surprised if the patient were still alive in
giving information to the patient, notably in the integration ensured that staff at 12 months time.
the British Lung Foundation ‘Guide to Rotherham Foundation NHS Trust were
Coping with the Final Stages of Lung fully aware of the aims and objectives of Advance Care Planning materials used in
Disease’ and an adapted version of The the study and its progress by that date. this project received mixed responses
Whittington Hopsital NHS Trust patient from both staff and patients. The British
leaflet on ‘Do Not Attempt Resuscitation’. Locally the project lead spent a significant Lung Foundation booklet contained too
amount of time working on engagement much information for some patients and
Patients and their carers were also given and ownership of the project by the was difficult for staff to use. Breathing
information about their ‘Preferred whole team. Continuing to have regular Space have decided to create their own
Priorities for Care’ (PPC) and asked if they monthly meetings and emailing feedback patient folder which can be personalised
wanted to complete any of the to all team members has helped with bite size information on different
documents either on their own or with overcome communication barriers with elements of care which can be provided
assistance from staff. staff who rarely spend time together due to the patient over a staggered period of
to changing shift patterns. Staff were also time.
Breathing Space used a PDSA (plan, do continually encouraged to comment on
study, act) approach during August 2011 the project and data collection successes Not surprisingly many clinical staff felt
to trial the form and they found quite and difficulties. very uncomfortable with end of life care
quickly that one prognostic indicator was discussions. Even when patients had
not necessarily an appropriate prompt for Respiratory services also face their busiest three prognostic indicators present on
initiating this kind of discussion and time over the winter months and high admission, there were a sizeable number
therefore staff were documenting ‘not admission rates and bed pressures have of audit forms where staff had indicated
appropriate’. The form was changed to impacted on the progress of the project an Advance Care Planning discussion did
use three indicators as the trigger point, where the time could be dedicated to not take place. This could have been for
and if senior staff felt it was not some of the data collection and many reasons, some included: previous
appropriate to initiate this discussion at administrative functions. bad experiences, lack of confidence in the
this point, they were asked to document skill to address this subject, a pre-
their reasons as to why. Talks with staff indicated that many of perception that it was not necessary and
them felt a certain level of unease when a fear of worsening the patients mental
A spreadsheet recorded all the data asked to engage in an end of life care state by introducing the topic of dying.
inputted from the paper audit forms discussion with patients. In order to Although these issues are still apparent
collected. In conjunction with this project ensure staff felt empowered and skilled they are being addressed through
ten staff on the inpatient unit attended a to undertake this sensitive and supervision and training.
preliminary training session on advanced challenging task, ongoing training in
communication skills delivered by a communication skills and the
palliative care specialist. This followed a development of clinical supervision
baseline audit of training skills amongst strategies have given support to staff
all staff. which has enabled reflective practice.

11. Breathing Space, Rotherham 11
Perhaps less surprisingly, many COPD
patients felt uncomfortable with the idea Breathing Space - Number of GSF GSF use in deaths in January -
of end of life planning and some patients indicators on death March 2011
were distressed when the offer of 60
Advance Care Planning was made
Outpatients
available. Staff reflected on these
Inpatients
Number of Patients
incidents and concluded that in some
cases an acute inpatient admission may 40
not be the most appropriate time to
initiate this kind of discussion. They are
now considering the introduction of some 20
general end of life care information
during the weekly pulmonary
rehabilitation sessions open to in and 1 GSF 2 - 3 GSF
outpatients of the service. 0
NR 1 2 to 3 3 or more Over 3 GSF GSF not
Number of indicators recorded
Data
Between 1 September 2010 and 31 July
2011, a total of 683 patients with COPD
were either admitted to the inpatient unit However, there was a substantial
GSF use in deaths in April - June 2011
(606) or attended an assessment for improvement in the recording of the
pulmonary rehabilitation (77). number of GSF indicators in patients who
died as the project term went on.
Overall 186 (27%) patients had at more
than three prognostic indicators at time
of admissions.
GSF use in deaths in October -
December 2010
83 patients died since 1 September 2010
(76 inpatients and seven outpatients).
Where recorded 18 out of 76 inpatients
who died had more than three prognostic
indicators, nine had two to three 1 GSF 2 - 3 GSF
indicators and six had one indicator. Of
Over 3 GSF GSF not
the seven outpatients who died, three recorded
had two to three prognostic indicators
and two had one indictor where it had
been recorded.
1 GSF 2 - 3 GSF
Over 3 GSF GSF not
recorded

12. 12 Breathing Space, Rotherham
Breathing Space - Comparison of pognostic indicators and end of life practice
18
16
14
Number of Patients
12
10
8
6
4
2
0
8 9 10 11 12 1 2 3 4 5 6 7
2010 2011
Month
GSF >3 and surprise =N ACP appropriate BLF completed PPC completed
Full year data from August 2010 to July
2011 is shown below with regard to the
number of patients with three or more
GSF indicators deemed appropriate for
Advance Care Planning and those who
went on to have the British Lung
Foundation booklet given and a Preferred
Place of Care recorded.
Project lead contact details
Gail South
Respiratory Nurse Consultant
Breathing Space, Badsley Moor Lane
Rotherham S65 2QL
Tel: 01709 421700
Fax: 01709 421701
Email: gail.south@rotherham.nhs.uk

13. Solihull NHS Care Trust 13
Two - Solihull NHS Care Trust
Improving identification of end of life care needs and Advance Care
Planning to support preferred place of care for patients with COPD
The background to the service
Solihull Community NHS Care Trust had
already adopted the Gold Standards
Framework in end of life care across all of
its 31 GP practices. Patients identified for
the Gold Standards Framework palliative
register access community services
through a supportive care pathway which
supports holistic assessment, Advance
Care Planning and proactive care
planning.
To date the pathway has improved the
provision of proactive coordinated care
for patients with end of life care needs in
Sandy Walmsley – Project Lead Helen Meehan – Project Lead
the community. However, it was
recognised that the number of patients
with chronic obstructive pulmonary The main objectives for the project A letter of introduction was sent to the
disease (COPD) accessing the pathway were to: practices to be involved. The project team
was limited. also attended primary care meetings,
• Increase number of patients with COPD such as a GP learning event in order to
It was felt the time was right to support on Gold Standards Framework register raise the profile of their work and spent
clinicians working in primary care and in from 8% (baseline) to 14% (the time in practices with community teams
community services with improving national average) sharing information on the Gold
identification of patients with end stage • Increase the number of patients Standards Framework prognostic
COPD for the Gold Standards Framework supported in the community on the indicators. They were also supported by
palliative registers. supportive care pathway some concurrent care of the dying and
• Monitor the number of patients: with communications skills training for staff in
The project aims and objectives COPD on the GP practice Gold the region which had been funded
The project team worked with 12 out of Standards Framework register, who are through the Strategic Health Authority
the 31 GP practices in the geographical offered Advance Care Planning (SHA) and delivered by Education for
area. The main aim was to improve discussions and who have Preferred Health.
identification of patients with end stage Priorities of Care recorded
COPD in primary care, to enable proactive • Monitor achievement of preferred place The information provided within the
coordinated care and support preferred of death and place of death for training sessions was formalised into local
place of care at the end of life. patients with COPD. prognostic indicator guidance which
along with the ‘My LIFE’ booklet was
Patients were supported by practices and What they did shared amongst GPs, community matrons
community teams using the Gold Baseline data was collected to establish and community respiratory teams.
Standards Framework, the local an overview of the current position with
supportive care pathway and Advance end of life care amongst the 12 GP Guidance on read codes was pulled
Care Planning materials devised by local practices part of the improvement together as part of the preliminary work
services (MY COPD and MY LIFE project. This revealed that approximately needed before the use of ‘Graphnet’
booklets). 9% of the total number of patients which is an electronic audit tool which
currently on the Gold Standards can be used to search GP registers for
Framework registers had an unconfirmed patients with certain diagnoses, as well as
or confirmed diagnosis of COPD. auditing patient outcomes relating to
specific read codes.

14. 14 Solihull NHS Care Trust
However, because of delays in being able Advance Care Planning is vital to Data on place of death showed that for
to implement the Graphnet tool the supporting patients at end of life. The the entire Primary Care Trust area (31
project team reverted to using the team benefited from already having the practices in total) the number of patients
community care electronic records system locally designed and readily available ‘My dying of COPD at home rose from 20%
(ePEX) to manually extract information on LIFE’ booklet which incorporates all the in 09/10 to 23% in 10/11.
patients they had identified through relevant information and is just for
practice registers who were eligible but patients with COPD. The patient satisfaction survey revealed
not currently on the Gold Standards that of those questioned 90% were very
Framework register. The project team were also been satisfied with the overall experience of
supported by two GP champions and care they had received to date.
A successful bid was entered to the increased much needed awareness of
Strategic Health Authority which resulted COPD end of life issues by providing Project lead contact details
in funding for two GP champions for training to GPs and community teams. Helen Meehan
COPD and end of life who were able to This was further reinforced with Lead Nurse Palliative Care
work for half a day per week with local information on the palliative intranet site, Solihull NHS Care Trust
practices. which can be accessed by all GPs and Tel: 0121 712 8471
community services. Email: helen.meehan@solihull-ct.nhs.uk
The team also developed a carer survey
which was completed on bereavement. The integration of the community services Sandy Walmsley
and the acute Trust had some unforeseen Lead Respiratory Nurse Specialist
Issues and challenges benefits for the project, mainly improved Solihull NHS Care Trust
The main issue that delayed progress was communication between the respiratory Tel: 0121 329 0179
the implementation of the Graphnet tool. community team and the end of life Email: sandy.walmsley@solihull-ct.nhs.uk
There was recognition early on in the provision on the wards. Overall
project that baseline data from Graphnet relationships have been improved with all
could not be captured retrospectively and stakeholders and especially hospices,
that some GP practices were using which now have greater awareness of
variable read codes which would have terminally ill patients with respiratory
made data extraction very difficult. The disease.
only solution for the team was to revert
to manually collecting patient information Data
through their own community electronic For the 12 GP surgeries the baseline data
record (ePEX) rather than interrogate at the start of the project demonstrated
individual practice registers in primary that 214 patients were currently on the
care. The team then faced further end of life practice registers, of which 20
disappointment in that due to patients had a (confirmed and
organisational changes due to the unconfirmed) diagnosis of COPD. This
transforming community services national represented 9% of patients.
work the IT department was subsequently
disbanded and the Graphnet tool could Midterm data showed the number of
not be implemented. COPD patients on the register had
increased to 28 – with 247 patients on
Key learning the register overall. This represented an
Anecdotal evidence from practice staff increase of COPD patients to a proportion
suggested that the Gold Standards of 11%.
Framework indicators were not as
effective as the surprise question ( which End of project data was only available
asks the clinician to consider whether from 11 practices and showed there were
they would be surprised if the patient 266 patients on the end of life register
were still alive in 12 months time) as a with 19 having a primary diagnosis of
predictor of death at six to 12 months. COPD (7%).
The project team are undertaking an
audit amongst GPs to determine more
robust evidence for this.

15. North Tees and Hartlepool Primary Care NHS Trust 15
Three - North Tees and Hartlepool
Primary Care NHS Trust
The implementation of BOD in primary care
The background to the service
The respiratory nursing care community
team have a well established service
which operates out of the heart of
Hartlepool in new facilities – ‘One Life’.
The current team have a well established
link to the palliative care community team
and as part of their commitment to
develop effective and quality care
pathways for patients they wanted to
address the particular challenges of the
end of life pathway in chronic obstructive
pulmonary disease (COPD).
A multidisciplinary end of life group
adapted an existing set of indicators
including: body mass index, FEV1
obstruction and MRC dyspnoea score
(originally including exercise and known
as BODE – Celli et al, 2004) which
became known as BOD.
The project team led by a British Lung Left to right: Dr Niall Kearney and Dorothy Wood
Foundation nurse and supported by a
respiratory and a palliative care consultant
trialled BOD within two GP practices in A process of staff awareness raising and improve shared decision making,
the Hartlepool locality. training on BOD as a prognostic indicator autonomy and access to resources for
tool and end of life care discussions took COPD patients. It is hoped that all of the
The project aims and objectives place alongside the case finding in order GP practices in Hartlepool will be
To improve recognition of the to embed the new practice with staff and approached and agree to record the BOD
deteriorating COPD patient and their end ensure sustainability. Index.
stage / end of life potential by utilising
the BOD tool as a prognostic indicator To date five practices are routinely Staff shortages in community respiratory
and trigger tool to facilitate end of life recording BOD scores during routine services made the project challenging,
discussion and referral to resources. COPD patient reviews. Scores are however, it is envisaged that once GP
recorded on a template and an increase practices understand the philosophy they
What they did in score at future consultations will will be able implement the project
Two GP surgeries were approached and indicate a deteriorating patient. without intensive project team
baseline data collected on the number of involvement in the future. Input would
patients on the COPD registers. Issues and challenges then be more of a supportive role.
Despite a positive start with the two GP
The BOD index was then used by the practices more practice recruitment is Originally there was difficulty in obtaining
project manager (Dorothy Wood) in required to demonstrate an evidence a template for recording BOD scores as
conjunction with the practice teams to based benefit from a qualitative well as obtaining a read code from
identify patients on the COPD register perspective and because of this a gradual information technology. Both were
who were eligible for discussion around approach to recruiting GP practices has eventually made available in April 2011.
their condition and given the opportunity been adopted. The implementation is Practices that do not have this system will
for Advance Care Planning. considered part of an on-going plan to be able to develop their own template.

16. 16 North Tees and Hartlepool Primary Care NHS Trust
The Trust covers two main urban areas: nurses to enable them to improve their Project lead contact details
Hartlepool and Stockton. There was a communication skills and confidence in Dorothy Wood
lesser degree of engagement from the managing planning ahead discussions BLF Lead Respiratory Nurse
Stockton area and although three effectively. ONE LIFE HARTLEPOOL
surgeries voiced an interest in Park Road, Hartlepool TS24 7PW
implementing BOD due to pressure of Data
work the support required to carry this The number of patients on the COPD Tel: 07917 172464
interest through has not been available. register for both practices remained Office: 01429 285712
relatively static throughout the project Email: dorothywood@nhs.net
Key learning period. Overall, by the end of the project
Learning on the use of BOD suggests it is 189 patients had been reviewed using
a good predictor of the intermediary the BOD scoring system which
stage between the start of decline in the represented about 85% of the total
patient condition rather than of death at number of patients on the register at
six to 12 months. June 2011 (223).
BOD was used as a trigger to facilitate
discussion about how the patient was Month No of patients on No of patients Cumulative
managing their condition and what the COPD register reviewed Total
patients concerns were. It also allowed
the professional to gather all of those July 2010 229 14 14
August 2010 229 15 29
concerns together and engage in shared September 2010 229 19 48
decision making with the patient about October 2010 228 22 70
their future. November 2010 225 16 79
December 10 225 15 93
Practice nurses recognised that those January 2011 225 19 102
February 2011 223 14 116
patients with the highest BOD scores March 2011 223 20 136
were predominantly those with the April 2011 222 23 159
highest morbidity and this ensured the May 2011 223 18 177
patient had the opportunity to plan for June 2011 223 13 189
their death when they were feeling well
(if they wished to) and had more timely
access to available resources.
Progress in reviewing COPD patients in two GP practices in Hartlepool using BOD
As with other projects it was identified 250
that not all staff were confident in
starting a planning ahead discussion with 200
patient. The Foundation Trust has now
Number of Patients
invested in training two members of staff 150
to become facilitators in delivering SAGE
and THYME™ training. (SAGE and 100
THYME™ is a communication model for
health and social care professionals to 50
enable them to communicate effectively
with concerned or distressed people and 0
respond in a way that empowers the Jul 10 Aug 10 Sep10 Oct10 Nov10 Dec10 Jan11 Feb11 Mar11 Apr11 May11 Jun11
distressed person). The two-day course Month
will gradually be delivered to practice Total patients on COPD register Patients reviewed using BOD this month

17. Acknowledgements 17
Acknowledgments
NHS Improvement - Lung would like to
thank all national improvement project
sites for their hard work and dedication
to improve quality and care for people
with COPD, and for their contributions to
this document.
In addition, the following people have
provided a source of expertise and
support and their help is gratefully
acknowledged:
Eleanor Sherwen, End of Life Care
Programme Manager, End of Life Care
Programme
Phil Duncan, Director,
NHS Improvement - Lung
Catherine Blackaby, National
Improvement Lead, NHS Improvement -
Lung
Ore Okosi, National Improvement Lead,
NHS Improvement - Lung
Catherine Thompson, National
Improvement Lead, NHS Improvement -
Lung
Zoë Lord, National Improvement Lead,
NHS Improvement - Lung
Alex Porter, Senior Analyst,
NHS Improvement - Lung
For more information please contact:
Hannah Wall, National Improvement
Lead for End of Life Care and Asthma
hannah.wall@improvement.nhs.uk

18. 18 References
References
COPD and Asthma Outcomes Strategy for
England and Wales (DH: 2011)
Consultation on a Strategy for COPD
Services in England and Wales (DH: 2010)
End of Life Care Strategy (DH: 2008)
End of Life Care Strategy (Department of
Health: 2008)
The Gold Standards Framework
www.goldstandardsframework.nhs.uk
The BODE Index
Celli BR et al (2004): New England
Journal of Medicine 350 p1005-1012
The National End of Life Care Programme
www.endoflifecareforadults.nhs.uk
National Palliative Care Council
www.ncpc.org.uk
The Whittington Hospital NHS
Foundation Trust
www.whittington.nhs.uk
St Christopher’s Hospice
www.stchristophers.org.uk
British Lung Foundation
www.lunguk.org

20. NHS
CANCER
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DIAGNOSTICS
HEART
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